Ethical Rhetoric: Genomics and the Moral Content of UNESCO’s ‘Universal’ Declarations

Harmon, Shawn

doi:10.2139/ssrn.1948087

Cited by 4 publications

(4 citation statements)

References 36 publications

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“…Cumpre-se destacar, conforme salienta Shawn Harmon 41 , que tal declaração não é apenas um guia ético mas sim um instrumento legal que materializa um compromisso internacional para a adoção de políticas no que concerne à proteção do genoma humano.…”

Section: Invalidação Das Patentes Sobre Dna Isolado E Proteção Do Patunclassified

IMPACTOS DA DECISÃO DA SUPREMA CORTE DOS ESTADOS UNIDOS NA PROTEÇÃO DO PATRIMÔNIO GENÉTICO HUMANO: caso Association for Molecular Pathology vs. Myriad Genetics

Costa

Brito

2016

Rev. Eletron. Direito/UFSM

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RESUMOO presente artigo analisa a decisão da Suprema Corte dos Estados Unidos, que invalidou as patentes sobre material genético humano de titularidade dos laboratórios Myriad. Questiona-se os impactos dessa decisão na proteção do patrimônio genético humano, considerando-o como integrante do meio ambiente, à luz das considerações bioéticas. O objetivo geral é a busca pela resposta a essa indagação sendo utilizado, para tanto, o raciocínio dedutivo-indutivo, valendo-se da técnica da pesquisa bibliográfica e do estudo de caso. Através da análise de considerações bioéticas acerca da importância de tal decisão na proteção do patrimônio genético humano, conclui-se que este não deve ser tratado como completamente intangível, mas que pode, segundo limites jurídicos e éticos, ser utilizado de forma a garantir a dignidade da pessoa humana e o meio ambiente equilibrado. Assim, a decisão da Suprema Corte auxiliou nessa garantia ao invalidar uma patente claramente indevida e sem obedecer aos requisitos legais. Palavras-chave:patrimônio genético humano; biodiversidade; patentes; bioética. ABSTRACTThis article examines the United States Supreme Court's decision that invalidated patents on human genetic material held by Myriad laboratories. It raises the question about the impact of this decision on the protection of the human genetic heritage, considering it as part of the environment, in light of bioethical considerations. The overall goal is the search for the answer to this question using, for that, the deductiveinductive logic and the bibliographic research technique. Through the analysis of bioethics lessons about the importance of such decision at protecting the human genetic heritage, it is obvious that the human genetic heritage should not be treated as completely intangible, but, according to legal and ethical limits, it can be used to ensure the dignity of the human person and the balanced environment. Therefore, the Supreme Court's decision helped to guarantee this dignity by invalidating a patent clearly improper and incompatible with legal requirements.

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Section: Invalidação Das Patentes Sobre Dna Isolado E Proteção Do Patunclassified

IMPACTOS DA DECISÃO DA SUPREMA CORTE DOS ESTADOS UNIDOS NA PROTEÇÃO DO PATRIMÔNIO GENÉTICO HUMANO: caso Association for Molecular Pathology vs. Myriad Genetics

Costa

Brito

2016

Rev. Eletron. Direito/UFSM

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“…A solidaristic perspective can also be found in a wealth of other international health instruments, all of which, of course, lends support to the moral foundation for global health justice offered above. The key, however, is to now marshal solidarity so that it informs other policy areas in more than merely rhetorical ways [40]. 25 We must draw upon mechanisms of solidarity to rebalance society-shaping imperatives (i.e., to retreat from individualism, unattainable perpetual economic growth, and market correction as the abiding social objectives), and to move toward greater respect for people by identifying equity and health as both normative and substantive goals.…”

Section: Values: Increasing Compassion Through Solidaritymentioning

confidence: 99%

In Search of Global Health Justice: A Need to Reinvigorate Institutions and Make International Law

Harmon

2015

Health Care Anal

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The recent outbreak of Ebola in West Africa has killed thousands of people, including healthcare workers. African responses have been varied and largely ineffective. The WHO and the international community's belated responses have yet to quell the epidemic. The crisis is characteristic of a failure to properly comply with the International Health Regulations 2005. More generally, it stems from a failure of international health justice as articulated by a range of legal institutions and instruments, and it should prompt us to question the state and direction of approaches to the governance of global public health. This paper queries what might be done to lift global public health as a policy arena to the place of prominence that it deserves. It argues that there are at least two critical reasons for the past, present and easily anticipated future failings of the global public health regime. After exploring those, it then articulates a new way forward, identifying three courses of action that might be adopted in realising better health outcomes and global health justice, namely value, institutional and legal reform.

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“…It is foreseeable that those guidelines, which will go beyond the 1980 framework, will be progressively reflected in national legislation and will sidestep the impasse evident in proposals under the auspices of United Nations bodies such as UNESCO [236,237]. What is less certain is whether the guidelines will articulate civil society expectations regarding genomic data (for example, in relation to a context-specific or more comprehensive opt-out or opt-in regime) and address dignitarian calls for institutions to conceptualize their activity as a trusteeship rather than ownership of data about people who are recipients of health services (or who, more broadly, are identifiable as relatives of those recipients) [238,239].…”

Section: Towards a Global Privacy Frameworkmentioning

confidence: 99%

Privacy, Personhood, and Property in the Age of Genomics

Bonython

Arnold

2015

Laws

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Revolutions in genetic technology have heralded the age of population-scale genomic metadata. This article analyzes the tensions and gaps between traditional conceptions of personhood and international legal responses to a person's right over disembodied data obtained from his/her body. The opportunities for breakthroughs in healthcare by interrogating population-scale genomic databases are accompanied by questions about privacy, property, dignity, and the nature of information regulation in a global economy. This article highlights instances where law and policy makers have grappled with these challenges, and foreshadows some emerging future challenges. It also highlights differences between jurisdictions, and calls for greater global participation in the development of a coherent framework, rather than continued reliance on a small number of stakeholders, to develop that framework.

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Ethical Rhetoric: Genomics and the Moral Content of UNESCO’s ‘Universal’ Declarations

Cited by 4 publications

References 36 publications

IMPACTOS DA DECISÃO DA SUPREMA CORTE DOS ESTADOS UNIDOS NA PROTEÇÃO DO PATRIMÔNIO GENÉTICO HUMANO: caso Association for Molecular Pathology vs. Myriad Genetics

IMPACTOS DA DECISÃO DA SUPREMA CORTE DOS ESTADOS UNIDOS NA PROTEÇÃO DO PATRIMÔNIO GENÉTICO HUMANO: caso Association for Molecular Pathology vs. Myriad Genetics

In Search of Global Health Justice: A Need to Reinvigorate Institutions and Make International Law

Privacy, Personhood, and Property in the Age of Genomics

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